Photo: Ana Ferreira
Yes, these were some of the questions that crossed the mind of some of the delegations in charge of preparing last year’s World Health Assembly. A new World Day has to be proposed by a member state –in this case Brazil– even though thousands of organisations and affected individuals support it.
And the questions were justified. In fact, proposals for new world days were no longer being accepted before deciding whether it made any sense to continue declaring more World Days. A preliminary report on the issue was commissioned. The possibility of having a World Day for Chagas Disease seemed to fade away. Furthermore, the request for Chagas seemed to decrease the possibility of new World Days for other diseases.
In fact, the yearning for a Chagas World Day dates back to before 2010, when different associations in several endemic countries came together in the FINDECHAGAS Federation. Since then, the associations unofficially celebrated their day every year, in parallel to the global health agenda.
The yearning for a Chagas World Day dates back to before 2010, when different associations in several endemic countries came together in the FINDECHAGAS Federation. Since then, the associations unofficially celebrated their day every year, in parallel to the global health agenda
The Global Chagas Disease Coalition decided to support the petition made by the patient associations and work with them, hand in hand, on the application for a World Day as a symbolic way of raising visibility of a disease that has been neglected for over one century.
Photo: Ana Ferreira
How a negative response became an opportunity
As the old saying goes: “some trains pass only once in life.” It often refers to love or work opportunities. Here we are talking of a World Day – that even if only symbolic – is very different to obtain.
The train started moving slowly, almost unnoticed. What seemed to be a negative response by the Assembly’s Preparatory Committee became an opportunity. The report commissioned to assess the cost benefit of world days recognised the lack of a standardised and accurate method to evaluate their impact. But it also noted the evident effect in terms of awareness and information, and increasing political and social attention on diseases that had their own World Day.
Yet, the voice of the World Health Organisation was lacking, while circumstances and trains passed by. And then, the WHO saw the arrival of a new director, born in Ethiopia, far from countries affected by Chagas but where sleeping sickness is prevalent. Again, little hope that the new director would express interest for the Chagas request, but the Brazilian delegation put it back on the table. To the surprise of many, the director’s support was not only explicit but also enthusiastic. Chagas World Day would be discussed during the World Health Assembly in May 2019!
The Brazilian delegation put it back on the table. To the surprise of many, the director’s support was not only explicit but also enthusiastic. Chagas World Day would be discussed during the World Health Assembly in May 2019!
Why Chagas and not… dengue? Or why not a day for all neglected diseases?
There was some legitimate and reasonable questioning. Why not a World Day for all neglected diseases, instead of an individual disease? From a communication and strategic perspective, celebrating one World Day that includes 20 diseases tends to dilute the impact on each disease. This was the justification sent to Ministries of Health of countries with affected communities, together with the official letter by FINDECHAGAS asking for support for Chagas World Day.
FINDECHAGAS also launched a petition in change.org one month before the World Health Assembly, and managed to collect in record time 10,000 signatures that were delivered at an event organized by the Global Chagas Disease Coalition and the World Heart Federation in Geneva, during the days of the assembly. There, in front of representatives of member countries, of the WHO, of organizations and associations, the first voice to be heard was that of affected communities and, in some way, it helped to tip the balance for the final vote on May 24.
A unanimous decision. And now what?
The vote was unanimous: not one single vote against, even from those countries that do not have affected communities. Approximately 65 million people live at risk of Chagas disease, 7 million people are affected and 7,000 deaths occur every year, mostly in the 21 endemic countries in Latin America. However, due to migratory flows, the disease has become global, reaching countries as far away as Australia. In the United States alone, an estimated 300,000 people live with the disease.
April 14 was the day elected by the affected communities and officially granted by the WHO. It is the day when, back in 1909, physician Carlos Chagas diagnosed the disease for the first time in Berenice Soares, a girl from Minas Gerais, Brazil.
Ever since, the disease has suffered from the stigma of invisibility and silence. It requires more and better tools, as well as a greater engagement by policy-makers, funders, and the health community. The civil society needs more information, and affected communities need a stronger voice. Diagnostic tests and treatments must reach the people in need, and better data are needed for a disease that often goes unregistered. Needs, needs, needs... So many things are needed to reduce the disease burden and eliminate it as public health problem by 2030. The first step was to break the silence surrounding it.
Needs, needs, needs… So many things are needed to reduce the disease burden and eliminate it as public health problem by 2030. The first step was to break the silence surrounding it
A World Day represents that –a small way to break the silence, one day per year. Perhaps it doesn’t make a huge difference, but securing it has taken so long, so much energy and joint efforts, and so many lucky circumstances, that it is worth taking full advantage of the train that has finally started to move.
WHO Declares April 14 as World Chagas Disease Day